I wrote a few weeks ago about the rather shoddy way in which I discovered that I’d got cancer again – because a lowly admin lass (who hadn’t got a clue what she was actually communicating) had shunted me into a clearly-overcrowded and foreshortened clinic, clearly because there was an issue to discuss.

Since then I’ve been regaled with other people’s stories about how they, too, learned in shocking ways that they’d got cancer. Here are some of them, below, in their own words.

Health care professionals, read and learn. Consider how sheer carelessness, system-led processes, and sometimes even misplaced and cack-handed compassion can lead to casual devastation.

Kate – The ‘not even talking about it’ disclosure
I found out the first time after a routine mammogram led to a protracted wait in the waiting room, completely unaware of what was wrong but with an increasing sense of foreboding. And I actually found out I was in trouble when a junior technician came out to the waiting area and asked me — just me, not anyone else waiting — if I wanted a cup of tea.

These moments are entirely unambiguous to patients and it really struck me how untrained so many staff are for that moment of accidental but deniable disclosure.

So, like ‘just phoning to move my appointment’, this is another example of how you can’t actually ‘not communicate’. This is people just not understanding that they can communicate whole worlds without necessarily mentioning the subject at all, without saying anything about the issue at hand.

Annie – The ‘death sentence on your doormat’ disclosure

(I know, I know, I know, that a cancer diagnosis isn’t a death sentence, so forgive the hyperbole, but I honestly think that for most people, hearing for the first time that they have cancer, it feels like one.)

This reminded me of when I was waiting for the results of my breast lump biopsy.
‘What happens now?’ I asked.
‘Oh, if everything’s OK we’ll ring you,’ she says. ‘If not, we will send you an appointment letter.’
I walked away thinking ‘Do they think I’m feckin’ stupid? That I can’t work out what the phone call vs the letter means?’
We have never listened so hard for the phone to ring, nor stayed in, just in case it did.
Fortunately, it did.

So, just to be absolutely clear here. Imagine how it feels: you haven’t had a call from the hospital, and then a letter from the hospital drops on your doormat.
It might as well have a big 2-inch high CANCER stamp on the outside of the envelope!! Because you didn’t get the phone call and this can only mean one thing!

And it doesn’t say ‘We’re a bit worried about you’. It doesn’t say ‘Sorry that this isn’t as straightforward as you’d have liked it to be.’ It can’t say ‘Sit down while we talk about this, because this is probably one of the hardest bits of news you’ve ever had to process.’ It is so heartless, so mundane, so empty of information, so full of dread. It says ‘An appointment has been made for you in Clinic 7 at 2.45pm on Thursday.’

This seems to me the completely appalling thing. It’s a cop-out. It’s ‘just admin information’, but it bears a colossal, and completely unambiguous subtext, just by lying there on your mat.
And then you have to bend down and pick it up. You wouldn’t deliver a death sentence to a war criminal like that – on a bit of paper, on a doormat. YOU HAVE TO BEND DOWN AND PICK IT UP! And, somehow, stand back up again.

Barb – The ‘system doesn’t give a toss’ disclosure
I’d been to-ing and fro-ing with a lot of letters and cancelled appointments about my sore knee, then x-ray’s and scans. Then I got a letter out of the blue, asking me to go to an appointment at the Oncology clinic. No-one, up to that point, had mentioned the C-word, or any possibility that there might be anything sinister going on. I don’t know how I stayed sane in the days up to the appointment.

Doesn’t anyone ever look at an automatic letter they are designing and stop for a second to think: ‘What effect might this have if it landed on my doorstep?’

Sue – The ”Don’t blame me; it’s the process” disclosure

After years of treating haemorrhoids that I was sure weren’t the problem, they said: ‘OK lets have a look – quick day surgery, and we will cauterise them.’ So, day surgery day arrived, I was first on the list at 8.30 and remember clearly I came round at gone 11.30. I asked the nurse why it was so long when it was only going to be 20 minutes and
she said, ‘Oh they had to do a bit more than they planned,’ (first alert!) but I was discharged home in a couple of hours after the obligatory toast with no further information. That was a Tuesday.

On the Friday I got a call from the Consultant’s secretary: ‘Could I come in on Monday?’ ‘So it’s bad news, then?’ I said. ‘Well, I can’t confirm that by phone.’ In my head this couldn’t be anything but careless confirmation that there was indeed bad news. I arrived on Monday and the consultant said ‘Well, we didn’t expect this from you: you don’t fit our usual picture,’ (or words to that effect), ‘And I guess you’ve worked out you’ve got cancer! That last bit is verbatim – it is ingrained in my memory and I’m sure you get that – like you’ve been thrown against the wall. He said ‘Right, I need you in for surgery. Sign here and come in on Wednesday.’ No question about did I have anyone with me, could I get home alright, no further explanations about where the cancer was, or even what it was. I found all that out later.

But isn’t it a rubbish, rubbish, response?

It can only be justified as being of benefit to the person initiating the call, who doesn’t have to have the difficult conversation. The caller actually communicates the result – without being explicit, but completely unambiguously – while being resolved of all responsibility for its impact.

This, because a rule that says you can’t give this news over the phone. But, clearly, you’re giving it anyway, just not taking any responsibility.

You can’t give it over the phone because:

The person might be on their own.

They might faint or become very stressed.

They won’t have anyone to talk to and ask questions of (the dreaded ‘nurse in the corner’)

But this way – this careless, callous way – of ‘not giving bad news’, your person might well be on their own, might well faint or have heart attack, and they still won’t have anyone to talk to.

But, because you haven’t ‘told’ them, just sent a letter, or rung them ‘with an appointment’, it isn’t your fault.

A week ago I had a completely appalling conversation. Short, but devastating. I suspect it’s something that happens fairly frequently. As an indicator of where we are with person-centred care, and ‘great conversations’, it leaves a little to be desired. It went like this.

Last autumn, after a regular scan and Oncology appointment, we set a date for the next appointment. I’ve had lots of scans since my first diagnosis in 2001 (50+), so we set a bigger interval than usual, and the appointment was made for August 5th. A couple of months ago the CT date came through and it was for Friday July 1st, five weeks before the appointment with the consultant.

So, I had the scan at the beginning of July, and I got a call week later from the Oncolcogist’s secretary, asking would I like to come in on July 15th, instead of waiting until August 5th? This set alarm bells ringing, so I asked: ‘Should I be concerned about the appointment being brought forward?’ ‘Oh, no,’ said the Oncolcogist’s secretary, ‘we haven’t had the report yet.’

Relieved, and re-assured, I didn’t pursue this, and assumed that someone somewhere had noticed the 5-week gap. So we negotiated a date for July 15th, at 4pm, at the end of a long Friday afternoon clinic.

So far so good.

The conversation

On the Monday – the next working day – it all went pear-shaped. I got a call late morning, from a young women, from admin: ‘I understand that a colleague called you on Friday to arrange an appointment for 4pm this coming Friday?’

Me: ‘Yes…’

‘Well, the doctor now has to leave at 2.30pm…’

Now, there wasn’t actually a break in the conversation at this point, but in Fiona World, time stopped and in my head I was shouting: ‘If the doctor has to leave early, bounce my appointment. Let it be put back a couple of weeks. Please let it not be a priority. Bounce me, bounce me, bounce me.’

‘So…’ she said, ‘Could you come in at 2 o’clock so that the doctor can see you?’

Shit. So, really not ‘bounceable’. I had already (and I think innocently) been jemmied into the back end of a busy Friday afternoon clinic. Now the busy clinic was being curtailed, and loads of people would be getting postponed, moved, cancelled. And I – the Johnny-come-lately who wasn’t originally going to be seen until August – was suddenly the appalled owner of one of a tiny handful of ‘golden tickets.’

I knew there was no point trying to get any more info or reassurance out of the young woman, who had clearly been given a task and a list, and had neither the knowledge nor the authority to disclose anything further. I didn’t try.

So I accepted the appointment. She said something like ‘That’s lovely then. Good bye.’

And that was that.

There isn’t a cancer patient in the world who wouldn’t jump to the same conclusion I did: that the scan result was ‘significant’. Discussions had to be had. Possibilities weighed up. Plans needed to be made. Clearly my renal cancer had returned.

The consequence of the call

How can this happen? How can anyone think that this is a good way of getting information to a patient? A useful conversation to have with a patient? And hasn’t anyone considered what this looks like from the patient perspective?

I – we, thank goodness – were left to sit out four days until the appointment, with no option but to speculate on the precise scale of the shit-storm that was about to be visited on us. You can imagine what was going throug our heads: from the worst – untreatable tumours everywhere, through more ‘challenging’ or multiple tumours in my bones/head/liver; and difficult/risky surgery (again) followed by lots of shite; down to the best outcome in this surreal world – a single lesion that’s reasonably easily-get-at-able.

The level of completely unintentional carelessness that this conversation emelodies is difficult to describe.

This is an example not of ‘person-centred care’ but something you could only call ‘patient-orientated carelessness‘.

Either no-one considered the effect this type of conversation would have on a patient, which you could characterise as a ‘not thinking’, ‘careless’ type of carelessness. Like teenagers with a stash of dirty plates in their bedrooms, because it just hasn’t occurred to them to bring the stuff downstairs. No-one had even considered what impact the conversation might have on a patient.

Or the effect was considered, but no one thought it mattered, which amounts to an actual ‘lack-of care’ kind of carelessness. Worse, in fact.

But either way, I t’s actually a complete absence of care, or of caring.

The rational for the process

I completely understand the policy that says that you don’t want to impart bad news to a patient over the phone – distressed patients, no support, no-one with them. That you really want a proper conversation in appropriate surroundings with support and information on hand.

But the way that this was done – and I’m sure this wasn’t a rare occurrence – meant that I might as well have been phoned with the stark news. Even the most difficult conversation with an oncologist or a nurse over the phone has to be better than effectively getting the same news from a poor lass in admin, via a conversation about appointment times.

Because the way that this was done meant that I was, effectivelygiven the bad news, but accidentally, by a poor lass from admin who almost certainly had no idea what the conversation meant at my end of the phone line.

So I got the bad news anyway, by accident, without any input from a professional, or any support. Lose-lose.

To reiterate, it was perfectly clear and unambiguous to me what the call meant. But the system, the process, the pathway, maintains a pretence that it’s ‘just a call about an appointment time’.

Does the system think I haven’t got a brain??? That I can’t put two and two together?

What’s the solution?

So how should we be reallocating and prioritising appointments without letting the cat out of the bag? As far as I can see, the only solution is to ensure that all patients are seen in a timely way after a scan, so that no-one – regardless of the outcome – has to be ‘brought forward’ and alarmed in the process.

The result of the scan

Yeah, my cancer has recurred. It wasn’t entirely unexpected, because we’ve always known the cancer – characterised as ‘oligometastatic’ – was more than likely to come back and bite me. It’s a small-ish lesion, just one (at the time of writing, at least), in my right, remaining, kidney. It’s one of the strange things about Cancer World (CancerIsUs?) that it comes as a relief when it looks as though there’s only one tumour.

We’re probably going to blast it, in a process called pulsed radiofrequency ablation. Should be do-able. Shouldn’t be as bad as the last go-round’, which involved a Whipple’s. Then we go back to scanning until the next little fecker turns up.

Co-production, the best (if most elusive) version of ‘patient involvement’ is, rightly, gaining ground as an idea.

Get your Co-production Model here!

So it’s great news that the excellent Co-production Model, recently launched by the Coalition for Collaborative Care (C4CC) is available for anyone to use and share. Working in true co-productive style, with dozens of partners inside and outside the NHS, the result is a model of simplicity, sense and plain English. And – even better – it isn’t a report or a thesis: it‘s on a single A4 page!

In a meagre 300 or so words* it explains:

what co-production is,

five ‘values and behaviours’ that need to be present in an organisation to make co-production possible,

seven steps to implement it.

It has already been received with huge enthusiasm in several places where it’s been presented, which seems to be to reflect the reality of where we are with co-production – that the argument ‘for’ has largely been won, but that people aren’t sure how to do it, or where to start.

The rightness of doing co-production

In fact, there is a growing acknowledgement that co-production is simply the right thing to do, both for people who use services and for their families. But it also makes operational sense. This is true for lots of reasons, but here are the three biggies (and some slogans!).

First, it’s better for people when they are actively involved in their care. After all, people with long-term conditions are probably best-placed to know what services they want and need, and they can contribute massively to their proper design and planning.

Slogan alert #1: Plan with us, not for us.

Second, you get better outcomes. Individually, patients will understand more, ‘comply’ more, and be healthier. At a strategic level, when systems and processes are designed with users, you get to the right solution quicker, and with fewer iterations. Then, once in place, the new products and services work better, faster, and with fewer revisions.

Slogan alert #2: We know things you don’t know; we see things you don’t see.

Slogan alert #3: As ‘expert advisory groups’ go, if people who use services didn’t exist, you’d have to invent us.

Third, it’s better for health care professionals. Usually a bit scared and sceptical at first, the experience of the C4CC Co-production group, and hundred of other ‘users’ working with professionals around the country, is that once professionals have co-produced properly, they are bitten by the bug, and become serious advocates of the methodology. Pathways work better, systems work, and job satisfaction goes up.

Slogan alert #4: Co-production helps us to prioritise, and that’s better for us all.

How to do it and where to start

The interest shown in discussions about co-production, and early reactions to the Co-production Model, suggest that there is a huge number of professionals out there who really want to work using co-production, but aren’t sure how to go about it. (Although the oft-cited difficulty in ‘finding patients’, frankly seems a bit weird to me…)

Co-production is the easiest thing in the world to do badly, and really hard to get right. But the basic principles aren’t difficult, and the Co-production Model suggests a methodology that is simple and straightforward.

It’s a great place to start. And it’ll be followed at the end of summer with some case studies that will help further to address some of the practicalities.

The chances are you won’t get it right the first time, but don’t let that stop you.

Slogan alert #5: Don’t wait until the plan is perfect. Make a start, and fix it as you go along.

Shahana Ramsden blogs for us today on her 5 ingredients for co-production. She is the Senior Co-Production Lead NHS England and the Coalition for Collaborative Care (Co4CC). Shahana’s 29 year career includes supporting co-production with people who use services and carers and leading equalities programmes. Prior to her role with NHS England and Co4CC, Shahana worked as a Patient and Public Voice Manager for NHS England’s Patient Online programme. Shahana has been recognised by the Health Service Journal as a BME pioneer and was highlighted as one of 100 virtual change activists for Health and Social Care through NHS IQ (The Edge).

Working in Co-production with patients, people who use services and carers can be simultaneously simple and complex. It is messy, not linear. When it works well we have to prepared for a change in culture so that we avoid fitting people into boxes and are prepared to position the organisation…

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These were the words that, more than anything, made us realise that we are now really, actually, not-messing-around-this time, in the end stages of Mum’s life.

It’s hard to credit now, as we sit and doze through the night around her bed, that in early August Mum was living independently, crosswording and quizzing, bragging relentlessly about her children (natch), and dancing at her grand-daughter’s wedding.

Because now we’re strewn around her much-lived-in room on the stroke unit, exhausted after our various efforts – vigils and mad dashes. The room is a mess now: hastily packed rucksacks; a tray of hot water flasks, cups and teabags supplied by the staff; my brother on the camp bed and my sister dozing edgily in the reclining chair I’ve just vacated; extra blankets and pillows; biscuits and water bottles. Tissues.

It’s a mess, this dying business, a hard and knackering mess. And in this case it’s a long drawn-out one. Lots of medical issues, many complications, recurring infections, and oh, don’t mention the roller-coaster.

It’s been mostly a ‘good’ experience. The staff are kind and caring, and after four and a half weeks on the stroke unit, mostly familiar. The nursing staff seem fond of Mum and are determinedly trying to keep her comfortable, clean, dignified.

But patient-centred care? Are we there yet? Not by a country mile. In Kate Granger’s own patch I was impressed when on the first emergency admission, a health care assistant said ‘Hello, my name is …’. But it was more than two weeks later on her second admission before I heard it again, from an excellent neuro consultant. And I haven’t heard it in the last four weeks.

You can’t help asking all the time what this would have been like for her without the advocacy of her confident, assertive, family. I’m sure it would have been very different, even if the outcome ultimately wouldn’t have been.

We had to nag about the horrible and largely unexplained wound on her leg. Once the plastics people had declared it ‘not their area’, it wasn’t of concern. Actually, it was causing her huge distress, but in my darker moments I suspected that as long as it was out of sight and tidy, that was all that mattered.

After her ‘multiple strokes’ and ‘silent heart attack’ and with her busted lungs, there’s been little attempt to get her out of bed, save for a couple of hoisted episodes that she has slept through. Can you be too poorly for physio?

I’m not bitching about the clinical care. There’s been a lot of getting her temperature down and getting the oxygen up, and swabbing for infections, and lots of x-rays. But there hasn’t been much longer-term planning, or even wondering, about which aspects of this woman’s life might have been salvageable. At least not that has involved her or her family.

And I bet – I’ll bet you anything – that at the ward round, my clever, stylish, cryptic-crossword-solving, sociable, witty Mum is referred to as ‘an 82-year-old female smoker’.

I’m a relative rookie at the wheelchair business. It’s only since 2011 (and my third/fourth cancer surgery) that my mobility has been radically reduced, and I’ve joined the wheeling world. So, when I got involved in the first Wheelchair Summit, and casually asked my wheelchair basketball team what their experiences of Wheelchair Services were like, I was, to say the least, blown away by the response. I was pinned to the gym wall for twenty minutes, and regaled with tales of woe.

It was pretty shocking: awful delays; badly fitting chairs; chairs so heavy they were harming users and parents, even leading to surgery; simple repairs that took weeks to process and sort. Most of them were quick to say that the service providers were really trying.

After years of previous attempts to address this, we have formed the National Wheelchair Leadership Alliance, to bring together users, providers, commissioners and manufacturers, to chuck everything we can at this, and sort the service once and for all.

Our aim is that everyone who needs a chair gets the right chair at the right time. With the right kit, a user can go where they need to go, do the things they need to do. It’s the difference between school and no school, work and no work, getting out and having fun, or being socially isolated. It makes social and financial sense, to ensure that all of us can be as independent as possible.

So please take the time to read through the Alliance’s Charter and agree to sign up to its principles.

Your support will help to raise the profile, and get this often-forgotten service fixed, for me and for tens of thousands of other wheelchair users. Thanks. Fi